Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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/ Sjogren's Syndrome Support Group

dont understand ss and slightly frightened.....

gypsyfi
gypsyfi

Hi, So I was diagnosed with SS about 9 years ago, it's never really affected my life apart from needing eye drops. Ive been able to feel the lymph nodes in my nech and under my arms for many years and this freaks me out as I get really worried about serious illness. My ESR marker is raised but my doctor says thats nothing to worry about, I dont have a specialist but my GP has always said being able to feel my lymph nodes is not a prolem and is actually common for some one iwth an inflamatory desease, is that true? Is it also true that ESR is often raised for SS patients? sorry to be a panicer but I dont really know where else to ask, I try googling and then freak right out because i convince myself I might be really ill......any input gratefully received!

alwayspeachy
alwayspeachy
I have intermittent swelling with my salivary glands, but I also have reactive nodes under my arms and in my neck so sometimes they can be felt more easily than at other times. Inflammation will make your ESR be elevated as it's an indirect measure of inflammation. However, the best advice is to always check with your physician if you have a health concern that is bothering you.
gypsyfi
gypsyfi
Thanks for the reply! I really have no health concerns apart from being terrified of getting ill due to the possible complications of SS. The fact that my ESR is elevated scares me as I know it can be a sign of something serious (ie cancer) as can lymph nodes. I mean none of the lymph nodes are bigger than a cm, most are smaller, Im pretty thing, 58kg, so the dos says they are hardly swollen at all......but t just scares me.....but your reply helps, thank you!
maizeemae
maizeemae
I was diagnosed with Sjogrens in 2014. Its a ride and you have to just go with it. I have a lot of Lymph nodes that swell in my neck. I am 58 and we traced it all the way back to 1977. They didn't know back then what was wrong so they just passed it over. Looking back now I realize that it was Sjogrens way back then. Through the years if I had surgery I didn't pop back right away it took longer and I scarred much worse that others. Didn't Know why. I also have RA. Didn't know back then why I had such neck and back pain. When I was pregnant didn't know why I had unexplained rashes. Still do but now know why. I am at the point where I get chemo infusions every 6 months with two doses two weeks apart. That seems to help me. Redirects the white blood cells and helps with pain. With each thing that arises you just have to go with it.